If your doctor told you that you had a neuroendocrine tumor, or NET for short, what would you think? Many possible questions may come to mind. Do I have cancer? How is this treated? What type of doctors treat these types of tumors?
To understand a diagnosis of neuroendocrine tumors, it helps to understand the basic biology of the neuroendocrine system. These cells are part of the endocrine system which includes the pituitary, pineal, thyroid, parathyroid and adrenal glands, pancreatic islet cells, the ovaries and testicles. Neuroendocrine cells are found throughout the body, but mainly in the digestive and respiratory systems.
Neuroendocrine cells can receive messages from the nervous system and make hormones in response to these messages. When neuroendocrine cells change and don’t behave normally it may lead to neuroendocrine tumors. Most often these tumors are benign, but sometimes the changes can lead to cancer. Merkel cell cancer, which affects the skin, and adrenal tumors are two of the many types of neuroendocrine tumors.
Signs and symptoms
In early stages, a neuroendocrine tumor may not cause any signs or symptoms. Symptoms usually appear if a tumor grows into surrounding organs or starts to produce hormones. Since these symptoms may be vague, it makes neuroendocrine cancers hard to diagnose. Later symptoms are dependent on the location of the tumor. For example, pancreatic neuroendocrine tumors may block the bile duct and the person may be jaundiced, showing yellow skin and eyes. Large neuroendocrine tumors in the lung may cause difficulty breathing.
Treatment decisions for neuroendocrine cancers are based on the stage, grade, location and hormonal status of the tumor. Treatment options include:
- Biological Therapy
- Radiation Therapy
- Clinical Trials
The type of neuroendocrine tumor, the stage and location in the body will help in determining what type of doctor you will need. Patients with NET diagnosis benefit from seeking treatment with a multidisciplinary approach, a team of specialist who specialize in neuroendocrine tumors.
Questions to ask your doctor
- What type of neuroendocrine tumor do I have?
- Is it cancerous?
- If so, what is the stage of the tumor? What does this mean?
- How much experience do you have in treating this type of tumor?
- What organ(s) is the tumor affecting?
- What are my treatment options?
- What clinical trials are open to me? Where are they located, and how do I find out more about them?
- What are the possible side effects of this treatment, both in the short term and the long term?
- How will this treatment affect my daily life?
- Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?
- What follow-up tests will I need, and how often will I need them?
Follow up testing varies depending on the location of the neuroendocrine tumor, the stage of the disease at diagnosis, and the initial treatment given. Generally, your doctor may have you follow up every 3-6 months to determine if new symptoms have developed after initial treatment. Imaging studies such as CT or MRI scans are usually done every 6-12 months or if symptoms develop warranting an immediate imaging study.
Take the next step:
- Learn more about the Division of Endocrine Surgery at the University of Michigan Health System.
- Read about the U-M Comprehensive Cancer Center’s Multidisciplinary Endocrine Oncology Clinic, one of the only fully-integrated, interdisciplinary clinics for thyroid and adrenal patients in the world.
- Watch a video explaining the ABCs of carcinoid and neuroendocrine tumors from the Carcinoid Cancer Foundation.
- Still have questions? Call the nurses at the University of Michigan Cancer AnswerLine™. They can help patients or their loved ones find a clinical trial or provide insights into the newest and latest cancer treatments. Feel free to call at 1-800-865-1125 or send an e-mail.
The Cancer AnswerLine™ nurses are experienced in oncology care, including helping patients and their families who have questions about cancer. These registered oncology nurses are available by calling 800-865-1125 Monday through Friday, 8 a.m. – 5 p.m. Your call is always free and confidential.
The University of Michigan Comprehensive Cancer Center’s 1,000 doctors, nurses, care givers and researchers are united by one thought: to deliver the highest quality, compassionate care while working to conquer cancer through innovation and collaboration. The center is among the top-ranked national cancer programs, and #1 in Michigan according to U.S. News & World Report. Our multidisciplinary clinics offer one-stop access to teams of specialists for personalized treatment plans, part of the ideal patient care experience. Patients also benefit through access to promising new cancer therapies.